Trying to make this blessed blog look cute.

And all I can say is "GRRRRRRRR!!!!!"

REALLY long time no blog!!!

I'm going to make an effort to use our blog again...after some persuasion from some avid bloggers (thanks Becca and Shannon!!) Here's a little of what has happened recently...

Joel graduated. *sloppy sobbing from a big sister* He's been through so much and we are so proud of him and what he's accomplished, and for being a Riley Champion. He's handled his illness, finished school despite numerous weeks in the hospital and three surgeries in a matter of 5 months last year. A year later, he graduated and has his sights set on psychology at IUSB. So proud!!
We went to Chicago on Memorial Day weekend, and took Mandy and Andy with us. We wanted them to experience how much fun we've always had when we go, and this is our hotel, the Palmer House Hilton, right off of the State Street shopping district.

This is at the Museum of Science and Industry. There is a display of unborn babies, ranging from 6 weeks gestation up until 40 weeks. All of the babies are real, donated fetuses due to spontaneous miscarriage :( and right here is the last two...a 26 weeker right next to a 40 week gestation baby. This is what Evan looked like, right next to how he should have been born.

Paul and Andy on the train. We stayed at my Aunt Brenda & Uncle Tim's place about an hour NW of the city, and rode the train in to stay in the hotel for Friday night. We took them to our favorite places in Chicago...the Chicago Pizza and Grinder Company, the Museum of Science and Industry, stayed in the Palmer House, heard some awesome Chicago blues music, did some State Street and Magnificent Mile Shopping, and two other restaurants that we go to when Paul and I go to Chicago. We had a blast.

Mandy and I on the train.

Long time no blog!

Paul is trying to fix the mower (it's been a long, drawn out saga) and Evan was offering his expertise.

Evan going down the slide with Great-Aunt Brenda. We took a quick weekend trip to see them. Evan had a blast. I don't think we were even missed when we went in to the city.

This is Grace feeding Evan. Grace and Evan were true buddies the entire time. He still claps at a certain point on one of his movies, something she did with him while he was there.

My apologies for our absence. No real excuse, just slightly overwhelmed with our schedule. Just the babysitting, Paul gets home, we play outside, make supper, clean up, and then it's time for Evan to get ready for bed.

Anyhow, tonight we fly to Florida to see Sheila. We had this short trip booked a month before John passed away, thinking he may be ill but not gone yet. But, it's a great thing we had it booked already because this will be good for her. Mandy and Andy went a few weeks ago, so she had these two trips to look forward to.

We're excited to get away, and to go to the beach, and to spend time with Sheila. We leave this evening from Ft. Wayne, at 7:20pm and get into St. Pete/Clearwater at 9:40pm.

I will add some pictures to this post. Again, our apologies for such a lag in posts!

Misty

Picture Post!!

Evan and Davin...this is while Mandy was spinning them around on Grandma Sheila's computer chair. We had tried to get nice pictures of them several times before this one happened.

His first skinned knee!! It's a rite of passage, I think! This probably sounds weird, but it was soooo cute!!

Getting into Grandma's cabinets.

So cute...Evan is extremely excited to go "bye-bye." He brings us his shoes, and tries to put them on alot. He gets excited when we put his shoes and coat on. He knows that if he takes his hat off he can't go bye-bye.

Thank you for your prayers while we said goodbye to John. Sheila is coping, and having good and bad days, which of course is normal and expected. We had a short trip planned for the end of May, long before John passed so quickly, and we are looking forward to getting to see her again soon.

Joel, (Misty's brother) is having his 2nd surgery on Apr. 13th. It will be his 2nd of three surgeries to be done. Hopefully the next one will be another 6-8 weeks out. He has recovered so well from the last one. He looked wonderful when I saw him last...he has gained 12 lbs back and his bloodwork has finally come back in the normal range!!! He struggled so long with anemia and all that goes with that due to so much blood loss. But the doctors couldn't believe how well he's done.

I am still babysitting during the day, all week long. It is certainly not for me. I get so restless being in the house all day, but it is so much work to get the two of them out of the house together that it is not really worth it. (And his mom doesn't want us leaving the house) I'm always glad to get out, and always look forward to doing so, but it is at least a half-hour process to get them out the door. If you have two very young kids, and think this sounds excessive, PLEASE chime in...I must be doing something wrong!

Paul still enjoys his job at Kirtlan Automotive. He is also working very hard here at home to help me keep things in order, and going through years of stuff that has been laying around that had just never been filed or thrown away when it needed to be. He is working hard on our finances too...we're doing the Dave Ramsey program to make things a little easier on us down the road.

Hope you enjoy the pictures!

Misty

Long four weeks

It has been a long time since I've written, my apologies.
As I wrote a couple posts ago, Paul's stepdad, John, was told there wasn't much they could do for him in the way of treatment for his leukemia. However, shortly after that, he received the news that a match had been found for him for his bone marrow transplant. We were cautiously optimistic and prayed that he would be able to continue to the transplant. However, it was a Wednesday a couple weeks ago, March 4th I believe, that he was told he had two weeks, and unfortunately he passed away that Friday, March 6th. Paul and I drove to Nashville to fly out with Andy and Mandy. John's services were on Monday, and Paul and Andy flew out on Wednesday, while Mandy and I stayed with Sheila until Friday with the boys. We're all just wiped out and exhausted, but glad to be home from such a long week. Please keep Sheila in your prayers...she will be alone for the first time on Sunday evening.

I'm not sure what else to say, and I don't have any pictures uploaded from the last few months, so I have none to share.

Walk, walk, walk!

All he does is walk!
It is really nice, though. I feel like he can't get hurt as much if he gets out of my sight as he could when he was crawling, because he doesn't try to pull himself up on everything anymore. He LOVES to escape from the living room by pushing the toybox barricade that I've created out of the way.
He's been sick the last few days as well. Thursday he had a fever of 102 and last night 103. No other symptoms, though. Makes me nervous that it could be one of those dangerous things like meningitis. Pretty sure that's not it, because it would have gotten worse by now. Just my worry-overdrive kicking in!

Joel came home from Riley on the 11th, and is still recovering at home. He's getting used to the changes, but it is still quite an adjustment. It seems that he is feeling better and better every day! He's been to school for some half-days, and has been able to hang out with some friends this weekend.

I'll try to add some pictures in the next couple days.

Lots to report!

We have a lot to report, and unfortunately it isn't all good news. We have good, okay, and disappointing news.
First of all, the disappointing news...Paul's stepdad, John, who has been battling leukemia for several years now, has been given the disheartening news that there isn't much else they can do to battle his leukemia, except a couple new drugs that are still in the clinical trial phase. Those drugs become available in the next couple months, and they are going to try those. In the meantime, he is feeling decent but tired and a little weak. Please pray for him and Sheila, as they wait for these new treatments. We all are, of course, scared and pretty upset by this news, but definitely appreciate the prayers. We pray we get to visit them soon.

Next, the okay news: My brother Joel, who has been battling ulcerative colitis for the last six months, is now recovering from the surgery that has resulted from it. In the last month and a half, he has received 18 blood transfusions and tried every drug imaginable to try to avoid having the surgery, but ultimately did have his entire colon removed. He is in the hospital right now at Riley Children's hospital, and is experiencing a tough recovery. The surgery was Friday, and he is in much better spirits and feeling better physically, but it is a tough recovery and he still has two more phases of surgery, occurring over the next 4 months, to get through. He was very very ill last week. (Which is the reason for the lack of blogging...I've been on the phone alot in my free time!)

Last, but not least...the good news! Evan has said his first word, "bread," is now trying his best to use WALKING as his main method of getting around, and is doing so well they tried to kick us out of his therapies!!!! Which, of course, was my greatest hope and worst fear...I still need those people to watch him! But, he does still qualify based on his gestational age at birth (26 weeks).
So, you must watch his new video below, entitled "Skinny Man Walking." Forgive the nakedness...he got away from me while changing his clothes and was so happy that I figured I could get a good shot of him walking, and I did!

Another update on Joel...

My brother, Joel, is still struggling with his health. He is continually receiving blood transfusions to battle the constant anemia that is part of living with ulcerative colitis. But he seems to be encouraged by his 2nd round of Remicade. At this moment he has been admitted to the hospital, but just for overnight to receive blood and then hopefully come home in the morning. It is his birthday tomorrow, so please pray that he will get to come home! This has been a long, rough road for my parents, and of course, Joel. He's had a rough year, if you remember in the fall he had an injury that took him out of most of his junior year of soccer.

Evan is doing wonderfully! I'll write more about him later! I have a great picture to post!

Update on Joel

Joel is home, feeling well. He came home last week, after 2 1/2 weeks down at Riley. He is continuing treatments on Remicade, a med to suppress his immune system, which is a fairly common treatment for UC. Anyhow, he's home, going to school sometime this week, but still very tired and possibly battling some ongoing anemia.

Our digital camera needs new batteries, so there haven't been any new pictures to post. And since I'm lucky to remember to brush my teeth in a given day, the new batteries have yet to be purchased.
Procrastinators of America...UNITE! Next week. Or maybe even the next.

Joel

Hey everyone,
Joel is still at Riley hospital, and we don't know now when he could be coming home. The bleeding still hasn't stopped, he's had his 4th or 5th blood transfusion, and the steriod that we thought was working so well has slowed way down. They're giving him until Tuesday to show significant improvement. The doctors keep telling him that he's showing improvement, but the symptoms that have been giving him so much trouble are still present. He's not eating. They want to put him on TPN (IV nutrition) but he refused to be hooked up to one more thing. My parents are so weary.
Please just keep praying, for Joel and my parents as well.
Thanks,
Misty

More Christmas Time Pictures

Landon and Evan from behind. They are the same size, except you can see that Landon has a lot more weight on Evan! Look at the difference in their arms...my little skinny mini will probably never be a body builder, but we'll get over it!

I caught Evan picking on Daisy while she was trying to take a nap.

I love this picture! Davin was interested in Evan's new bongos from his Uncle Matt, and Evan was patiently looking over his shoulder.

Just a quick note...

Hello,
An update on Joel...
He is rapidly improving on a different steriod, and may be out by the end of the week. Keep praying!!


Evan and Lucas are playing in the other room right now, and they are so cute together. Yesterday, Evan was crawling away from Lucas, laughing and turning around to see if he was still coming, because Lucas kept trying to eat his toes! And today, they are playing with the toys and Evan keeps yelling "Ma" and Lucas is laughing. Evan absolutely loves to play with him. Though, he does sometimes clock him over the head with a maraca or drumstick. It's okay though, because Lucas gets him back by kicking him in the head. He kicks everything.

I'll try to post some pictures that you might enjoy as well.

Joel

Hey everybody,
My brother Joel is still at Riley and will be until at least next week. He is improving though, and is in good spirits most of the time. I'm pretty sure I already explained a little bit, but he has a GI disease that has resulted in lots of bleeding, and has been at Riley since late Sunday night. He was severely anemic and S.Bend Memorial wanted him down at Riley to better control his symptoms, as his doctor, the only pediatric GI doctor around, practices down there. He was diagnosed with this last July, but has been suffering a severe flare-up for a few weeks, and it has come to this. But, as I said, it is improving! Hopefully we'll see him coming home next week.

Please pray for him,
Misty

Happy New Year!!!

He loves to play in his crib in the mornings.
This was Evan and Landon after we tried FOREVER to get a nice picture of the two of them together.

Misty, Evan, Gavin, Shannon, Sam, Becca, and Landon.

We got to spend a few hours together while we were in town.

Evan and Davin, his cousin and best bud.

Evan thoroughly enjoyed fingerpainting some gifts.

Happy New Year to everyone! We continue to thank the Lord for the healthy little boy we have, and know that this year will be even better than the last. Though last year we spent the holidays in the hospital with Evan, we have found ourselves celebrating this holiday season as his first. It just feels that way to us, since he didn't come home until Jan. 12th.

We had an awesome Christmas last week. Evan has more toys than he could ever play with in a week. He also received an Evan-sized armchair and a toybox. You know, now that I think about it, he really didn't receive a massive amount of toys. It was just the right amount to keep him busy, and for me to cycle in and out of the mix so that he doesn't stay bored with what he's already got. We also got to spend some time with Becca and Shannon and their families. Shannon's kids are Gavin and Samantha (Sam) and they are almost 5 and 2 1/2. Becca had Landon Jan. 25th, which was the due date that she and I shared. So, Evan technically should be similar in size to Landon and doing similar things. And he is! It is so exciting. Evan is possibly a little taller, too. But Landon has about three or four pounds on Evan, and is walking. But it was so nice to see that for his adjusted age, Evan is right on track! Praise the Lord.

I'd like to ask you for your prayers for my little brother. I don't want to say too much, but just to say that he is having some health issues and is at Riley Hospital right now until they are under control. He's been having these same health issues for a year, and was taken to the hospital Sunday evening in South Bend, then transported to Riley to get them under control. He's still there, and possibly will be through the weekend.

Diaper Rash!?!?!?!

Any ideas on how to treat real, red, inflamed diaper rash? Evan is miserable. He has never even had a red behind until now. It started Tuesday when he must have woken up in the early morning for his morning poo, then fell back to sleep, because I found a mess when he woke me up in the morning at 7:30a. It seemed to have been there for awhile. He's never done this before. He has had problems with yeast down there, which yes, little boys still deal with as well because it also lives in poo. This started as a yeast infection and I think it is now just a plain old diaper rash. His problem with yeast always started in the places that no longer exist because of his circumcision, but now it started from this one time waking up in the morning, sitting who knows how long in his poo. I already feel like a bad mom for lots of things, then I go and let this happen. I'm not sure exactly how I could have prevented it, but that's good ol' "Mom guilt" for you.
Ideas would be great!!

Christmas is coming soon!

Up on hands and knees!
Now, since he can crawl, he pulls himself up on everything!

This is one of his favorite places to pull himself up...the edge of the couch. He loves to sit on his knees, which he is in the process of doing right here.

He started crawling and finally got his 2nd tooth (1st one came in over two months ago!) on December 6th. Since then, he's gotten the rest of his teeth that come at this time...he has cut 5 teeth in a matter of two weeks!! He's done so much in the last two weeks for us to be proud of...crawling, tons of teeth, pulling himself up, cruising, and trying to let go of whatever he's holding onto when standing! He's a man now, not my little baby :(

We wish everyone a very merry Christmas! We will have a busy Christmas extended weekend, as we will attend one family Christmas gathering every day starting with Christmas morning and ending Sunday evening. No complaints, however, because we're eager to visit with family we don't see everyday. And we will miss Sheila and John, Paul's mom and stepdad, as they are in sunny Florida. Yesterday Huntington was -3 degrees. Florida was 73. This injustice has no words fit to describe it.


Here's a few pictures to enjoy of Evan...I'm sure Christmas weekend will provide plenty of opportunities for photo shoots, to add to the blog.

Surgery

Evan's surgery went really well. He didn't cry like they said he would coming out of the anesthetic, as I guess some kids really let loose. He was just himself! And, before the surgery, when they took him away, I was perfectly calm. I had thought and thought about that moment and got all upset nearly every time I thought about it. But the nurses and staff were all great, answering my questions and informing us about what was going to be done. And, when the nurse who would be attending the surgery came for him, he grinned at us, over her shoulder, all the way down the hallway. We dressed him in the little booties, and they even had an Evan-sized hospital gown, open in the back, of course! I found myself wishing I had a camera. Who wants to commemorate their infant son's surgery? Don't know what's wrong with me...

So, our crawling, two-tooth wonder (one top and one bottom...he definitely does things his own way) is slightly fussy and doesn't quite know what he wants at this moment as I write. He's watching a movie, and just might get to do so most of the day. His mom and dad, having gotten up at 2:45am to be in Indy by 5:30am, are anxiously awaiting their saviour, Grandma Rhonda, to arrive and allow some naptime!!!

Crawling!!!

Evan is crawling and is so excited to show it off!! Sometimes, he is so excited to be mobile that you can see his legs go faster than his arms. Funny!

I'm going to try to post a video. We'll see how that works out!

This is also the eve of his surgery...his "little boy" surgery. He is being circumcised tomorrow, very early in the morning, in Indy. We have to go to Indy because the pediatric urologist does not do surgeries here in Ft. Wayne because they do not employ pediatric anesthesiologists. And that is fine with me! We want him to have as little as possible, as we do not want him intubated (with a tube down his throat helping him breathe) because of the damage that has already been done to his trachea and vocal chords. If they do have to use more than a facemask or oxygen, they will use something different than the ET tube, and it will only go through his vocal chords and not down his trachea.

Anyhow, updates are sure to follow!



Pay no attention to the fussing baby in the background...it is Lucas. He was getting hungry.

Thanksgiving

A sort of journal entry from me (Misty), since I don't have access to any pictures right now :(

Thanksgiving means so much more to me this year, as I'm sure holidays always take on new meaning for those that were childless the year before. Listen to how I speak of it, though...as if he didn't exist last year. I have found myself several times this year thinking it was actually Evan's first Thanksgiving and Christmas. But it's not. And we do have fond memories of last year's holiday season...the NICU nurses and doctors, his photo shoots with Nurse Laura, the gifts we received for him, the time away from the NICU to be with family and friends we so missed. No, it's not his first holiday season, but it is certainly a different holiday season than last year. I have found myself emotional when engaging in typical, traditional events this holiday season, such as decorating for Christmas and having Thanksgiving dinner. I have so much to be thankful for. And it's not the good reports at the doctors, the milestones he achieves, or even his amazing smile that gets me emotional (most times). It's when we're doing something mundane such as grocery shopping, sitting down to dinner at Thanksgiving (not exactly mundane, but a very normal activity), and simply visiting with family that I find myself choked up. It is these very normal, traditional, day-to-day tasks and events that would be so very different had Evan's course in the hospital gone differently. He either just wouldn't be here, bringing a smile to my face nearly every minute of every day (except, of course, when he won't eat for me), or he could still be here but be a very different little boy, either physically or cognitively. But instead, I took home the sweetest, best behaved, smartest, happiest, cutest little man EVER. What did I do to deserve THAT? What makes me so special that I get him? Why do other people, who would make amazing parents, have to watch their precious little girl teeter on the edge of life for months on end, just to put her to rest in Jesus' arms? Don't get me wrong...Jesus' arms is a fine place to be, but why do they have to suffer and I get what I have?

I was so relieved today that we skipped one of our traditions of going around the table to state what we are thankful for. I was having one of my choked-up-because-we're-doing-something-normal-with-our-healthy-baby moments at just the time we would have been stating what we are thankful for. I'm sure I would have only been able to eek out the name Evan. Just Evan.

TWO Birthday Parties!!

Evan is so cool, he got two birthday parties!! At least, that's what he told me, so I'll let him think that. Here are some pictures from his two birthday parties. I don't have very many from the one he had in Walkerton that my mom threw for him, because my camera died!! Bad mom...

Again, he kept diving into the cake with his whole face!

Frosting face!

He LOVES the Baby Einstein caterpillar, so I got some 1st birthday stuff with it on it for him...his hat, bib, and a 1st birthday candle. He actually kept the hat on for awhile.

And his friend Lucy's mommy made him his cake...isn't it fabulous? I think she's for hire, so let me know! Each part of the body is a different flavor too! I was so excited to see this cake, and it got a big grin from Evan as well!

This is the only picture I have of him at his Grandma Rhonda's party. He still hasn't gotten to his cake yet. It was a Mickey Mouse head, with LOTS of black frosting. Thanks, Grandma Rhonda!